Smile Time

Last night for homework, Andrew had to compile a list of ten things that make him smile.  Here's what he came up with:

1. Having tag sales

2. Gift certificates to buy cool stuff

3. Posters of famous people

4. My brother Henry

5. Riding in convertibles

6. Laptop computers

7. Playgrounds

8. Restaurants

9. Watching "America's Funniest Videos" with my family

10. Going to the circus

For the record, we've only had one tag sale...which didn't make any money, but I guess it was more fun than I knew.  Nevertheless, this little exercise reminded me of how important it is to stop and recognize what makes our kids happy. It's funny to see what's on the list.  I think I'm going to ask our other kids to make one this week, just to enlighten John and me.  What are your kids smiling about these days?  How about you?

Special Needs Summer

February is here, and now it's time for Kris to begin obsessing about summer.  Specifically, how will Andrew be able to enjoy his "time off," but not regress in school?  Piecing together a summer camp experience, free time, family trips and school remediation is never easy.   Here are some things we've accessed over the years, which may be helpful to you.  If you're interested in something, click on the link and perhaps you can create something similar for kids where you live.  Or share your experiences with me and we can try to replicate somethinghere in CT that you've found successful: 

--Topping the list of successes for Andrew is sleep away camp, which he has enjoyed since age eight.  Yes, eight!  He spent a week at The Southampton Fresh Air Home, a camp for physically challenged kids located on Long Island (NY), and then "graduated" to their three-week-program at age ten.  As Andrew told me just last night, "I miss you when I'm at  SFAH, but it's good because I get to do things on my own."  Yes, I cried!  Wonderful time for Andrew's growth and development; great for the rest of our family to bond and thrive by enjoying things we can't do when he's with us.We all  love SFAH!

--Day camps have also been beneficial.  He started with a six-week-program at our local Jewish Community Center (which accepts children of all religions and abilities), and we identified a great male aide (college student/athlete) from Abilis (formerly ARC of Greenwich).  They bonded so well that we actually visited Kevin at college the following year.  Kevin and the other counselors adapted everything to meet Andrew's physical limitations, and worked hard to help Andrew develop friendships with the other campers, whom he remains in contact with today.

--Next we tried what Andrew calls "Cerebral Palsy Camp."  It was a local conductive education camp that employed two Hungarian therapists for an all-day, intensive therapy program that lasted six weeks.  Six hours of rigorous treatment, followed by two hours of computers and swimming at a nearby CP Center.  One of the therapists actually lived with our family for two weeks and my parents visited her in  Hungary.  (Are you seeing a trend here??!)  She was lovely, but Andrew hated it! He cried everyday and just seemed overwhelmed by all the physical demands.  They tried to make it social and fun, but it was just really hard for him.  We continued some of the conductive ed treatment over the next two years after school; however, we decided Andrew needed more fun and less work during our relatively short summer (10 weeks).

--Throughout the above summers, we worked with the school system to identify tutors with whom  Andrew could work on "off" hours. This enabled him to participate in camp and still gain valuable academic instruction to prevent regression.  After second grade, we decided to enroll him in our public school district's extended school year program.  He attended a grouped class for remedial math and reading instruction taught by a teacher he knows.  Four hours a day, supplemented with OT, PT and speech services (and then he did things with friends/family each afternoon).  We're glad we tried it with the district, but we opted to return to the tutoring approach for subsequent summers.  This really has provided more benefits to Andrew and helped him retain all that he's learned throughout the previous school  year.  Key is figuring out what your child needs (both instructionally and as a kid "off" from school for the summer), and then working with your school district to arrange something that helps meet those needs. Never easy, that's for sure.

--Something else we know about, but haven't yet participated in, is a camp experience for kids like Andrew and their siblings.  One of Andrew's aquatic therapists started it several years ago for a week in late August.  Everyone we know who goes there thinks it's incredible.  Check it out!

Lastly, we have hired local college kids over the year to help provide an extra set of hands with Andrew while I am scurrying about with the other kids.  This has always worked out really well.  I've posted "want ads" on college job boards for students studying OT, PT, special education, etc.  It's time-consuming and a little stressful looking for the "right" person, but always worth the effort.  Summer comes but once a year, right?  

Let me know what you do to make the most of yours.

 

Botox for CP

Andrew is scheduled to receive his first botox shots two weeks from today.  We're trying to avoid muscle-lengthening surgery to help loosen hamstrings.  His hips appear to be fine; however, he's grown so much and the muscles aren't keeping pace with the bones.  His legs are so tight he can no longer use his prone stander and is having difficulty standing to help with transfers to the toilet and his wheelchair.  We're hoping to see benefits from the botox.

Andrew is not concerned about the injections; however, I'm still really apprehensive.  There are obviously risks involved with botox.  Although our doctor is not concerned, I still have fears about side effects.  Secondarily, I know the shots are painful and that it will be a lot of work tomanage all the additional stretching that's required in order for this intervention to really be effective.

Do you or someone you know have experience with botox in the leg muscles to help with CP?  We're eager to load up on all the information we can get and gain advice with anyone who has it.    Please pass this post along if you know someone who can share.

Work for Change

Last November, I saw a post-election day poster by a young child, which read:

Rosa sat...

So Martin could walk...

So Barack could run...

So all our kids could fly.

I hope you can celebrate change today and that together we can create change for the better in our communities, in our world and for our children.

"All About Andrew" Information Book

Just told my sister about this blog.  She suggested I share info about a book we made for Andrew several years ago.  A friend had made something similar for her son when he went to camp and suggested we try it.  Great idea which is really very easy to do.  

"All About Andrew" is a binder that describes our son for those who don't know him.  We created it to help ease Andrew's transition from elementary to middle school. Gave copies to his new aide, teachers and even the school principal over the summer.  Updated the book the following summer for people at sleep away camp.  Updated it again this year for folks at an after-school reading program Andrew attends.  

As parents, John and I wrote an introduction to the book that describes our expectations, outlook and attitudes.  We thanked the reader for taking time to review the book and getting to know Andrew better through its contents.  Andrew wrote a short essay about himself, his family, hobbies, likes/dislikes and dreams.  He also selected photos of himself doing special things with friends and family, along with copies of awards that he's proud of.  Finally, we included two letters from former teachers and information on cerebral palsy.  

Unfortunately, many people are afraid to ask questions for fear of appearing ignorant.  But no one knows our kids as well a we do.  We've found that having "All About Andrew" helps to proactively dispel myths and educate people without them really knowing it.  (Thanks for the great idea, Ida!)  

I know we'll have to adapt Andrew's book as he moves towards high school.  Any ideas from you all about what to include?

School Bus Safety

Since kindergarten, Andrew has taken a special lift bus to school everyday.  The first year, his older brother rode with him. Since then, he's gone "alone," and thrives on the independence. While we miss the chance for him to socialize with other children on the neighborhood bus, Andrew has made great friends with some of the kids who ride with him, as well as his bus drivers and aides.  Thankfully, we've had mostly good adults help him each year.  And our driver for middle school is fabulous (just ask Andrew!).  Still, the tragic incident in New York City recently is a dangerous reminder of just how vulnerable students like Andrew are on school and public transportation. We do what we can to make sure the driver and Andrew feel comfortable and confident together, but you can never be too careful.  Still, here are a few things that work for us:  

1) write into the IEP that driver must come to our house BEFORE school begins each fall:  meet Andrew, learn about his power wheelchair; practice securing it onto the bus and loading Andrew on and off; 

2) develop transportation goals,  such as independently boarding the bus and navigating into his "riding position" on his own; 

3) complimenting the driver and/or aide to tranportation management and school district administration when they do something thoughtful, smart or competent (it's a hard job, and everyone deserves some praise); 

4) asking Andrew constantly about his bus ride to and from school to elicit information that we may not be getting from a driver; 

5) asking school personnel to work closely with the driver/aide to ensure everyone is aware if Andrew has had a particularly difficult or terrific day 

6) requesting that any substitute driver be announced to us in advance, even if it's an early morning phone call before school (enables us to prepare Andrew and, if we're not familiar with the driver/vice versa, to arrange alternate transportation for Andrew -- I drive).  

Clearly, this list is not exhaustive and additional input from blog readers would help us a lot.  Do you have any suggestions for making the school bus safer?  

Wii and Special Needs

Santa brought us a Wii for Christmas. All the kids love it, especially Andrew. It's the first video game he's truly been able to play. His favorite game right now is Wii Music, in which he can conduct an orchestra and learn/practice lots of musical skills. A great addition to the family "fun" arsenal. Given his limited hand usage, we didn't really expect Andrew to be able to utilize many of the other Wii games, but we have been proven wrong indeed. He pitches and bats in Wii Baseball, and we're still working on Wii Bowling. We've even asked his occupational therapist to devote next week's therapy session to Wii practice, so we can teach Andrew how to best manipulate the Wii controller given his physical limitations. Best of all, as this video clip shows, Andrew is really motivated by all this and is now an active participant in the activity, rather than just an observer cheering for his friends and family. Do you now of other video games or gaming systems that would be accessible to someone like Andrew? Wii welcome your input -- always.